Truly Inspiring: Shelby’s Story

Shelby was born March 30, 2006 and was by all accounts a typical baby except for a light case of lazy eye that we were told she would most likely outgrow before we needed to intervene.  She met all her baby goals on time except that she was a bit of a late walker at 14 1/2 months.  I became pregnant with her little brother when she was 10 months old (surprise!), so as the Mommy I was anxious for her to be walking before he came!  She did not get past the “drunken sailor” stage – she used something to walk with most of the time (a toy or a hand) and when she walked by herself she would lay her head on her shoulder.  Her Daddy and Grandpa had both had a lazy eye that required patching to correct and that, paired with her walking, concerned us enough to take her in to an ophthalmologist when she was 17 months old.  We were instructed to keep an eye on it, but there was no need to be worried just yet.

Not long after that our family flew back to the Midwest, from Georgia, where we were stationed at Fort Gordon, to have a last visit with my grandmother whom wasn’t expected to live long enough for us to go after the baby was born.  She was suffering from her second bout with colon cancer.  As soon as we got off of the plane Shelby’s nose started running and she seemed just generally miserable.  We assumed that she was suffering from allergies in this new climate as she would spit up mucous as soon as she woke up and her nose continued to run constantly.  Halfway through our trip, she lost her balance and fell from a camper straight onto her head on the cement pad.  We rushed her to the ER explaining the fall, throwing up and the flight.  We were told to just let her go to sleep since she was tired, her eyes looked fine, there was no concussion.  We asked about a CT scan but were told that would only be needed if she had a concussion.  Nothing changed the rest of our trip, but she did not improve either.

We flew back on a Wednesday, and I took her to the pediatrician on Friday where I was told that she had an upper respiratory infection that should be gone within 10 days.  She kept getting worse so I took her into the ER that Wednesday where she was given IV fluids, a chest X-ray and anti-nausea medicine. By Friday she had stopped walking completely and I rushed her back in.  She was admitted to the hospital and given more chest and abdominal x-rays.  I kept reminding the doctors of the fall to her head, asking if they should do a scan of it, but they thought she had an intestinal blockage of some sort. We were released from the hospital on Sunday since she had not thrown up while we were there (she had been laying in a bed hooked up to an IV the entire time).  As we got her ready to leave, she threw up again before we even got out of her room.  Again we were told to go home but come back if she got worse.

By Tuesday evening, she was throwing up constantly so I took her back in to the ER.  After more x-rays and scans of her chest and abdomen, there was a shift change and we got a new doctor that listened when I mentioned the fall to her head and the fact that she had stopped walking.  He sent us for a CT scan and finally after nearly three weeks of questions, at one in the morning, I was told that her head was full of fluid and what looked like a large mass at the back of her skull.  The army hospital was not set up to care for children, so we were taken by ambulance downtown to the children’s hospital, MCG.  She and I sat in their ER while a room was prepared for us.  I got to hold her on the gurney ride up to her room and while she was given an IV for the sedation medication so that a drain could be placed in her skull.  That was the last time I got to hold my baby for nearly two weeks.

An MRI was done that day to get a clearer picture of what exactly was in her brain.  Once the pictures came back, we met with the Pediatric Hematology/Oncology team and the surgeon that would do her resection.  The consensus was that surgery was a must as the tumor was wrapped around her basil artery, slowly suffocating her brain.  Surgery was scheduled the next morning and when talking with the surgeon after we were amazed at the miracle that occurred!

Typically, with her type of tumor (a posterior fossa ependymoma), the surgeon is able to remove the large central mass, but the tendrils throughout the brain tend to break off.  During Shelby’s surgery the tendrils remained attached (except for one little pesky piece that was removed the next day) and we had a complete resection!!  This was the absolute best case scenario we could expect, although it was recommended that she have 30 days of radiation therapy to help kill off any remaining cells that might be left.  It was on my husband’s 34th birthday that we were told the tumor had been stage 3 cancerous. We thought that this was the hard part and that we’d be back home in a few days, once Shelby was able to drain the fluid from her brain on her own.  Little did we know that our journey had just begun.

During our PICU stay, we learned about extubation (removing the breathing tube), EVD’s (internal ventricle drains), DVT’s (deep vein thrombosis) and how difficult it is to keep a determined 18-month-old baby under sedation if she’s ready to wake up!  We spent nearly two weeks in the PICU before being moved to the regular pediatric cancer area.  It was here that we learned about posterior fossa syndrome and the fact that our Shelby might never learn to walk, talk or even eat and drink on her own again. Those silly doctors forgot to give Shelby THAT note.  It was about a week later that she pointed at the door and said very clearly “Go!”  

Shelby started what we came to call her “work” while inpatient.  She would do physical therapy, occupational therapy and speech therapy each day, all to get as much feeling as possible back to her right side.  Because of the placement of the tumor and the surgery required to get it out, Shelby was left with no feeling at all on the right side of her body.  She has “phantom pains” similar to those felt by amputees and therefore picks at the spot trying to stop it.  She has chewed off the corner of her lips, picked off a small portion of her nose and given herself an 80% corneal abrasion because of this.  She would have to wear “no-no’s” which kept her from being able to bend her elbows to try to stop the picking.  She is legally blind in her right eye and we’ve had to stitch the corner of her eye closed to try to protect what sight she has left.  As she’s gotten older, her picking has diminished a lot so we are hopeful that the damage to her face will be able to be repaired at some time.

October 31, 2007 was one of our busiest days since Shelby’s illness.  It was this day that she first scratched her eye, had her first radiation treatment, had her G-tube installed in her stomach AND her baby brother was born!  Shelby wasn’t too sure about that little guy at first and Mommy was super worried about caring for two babies that couldn’t walk or eat on their own, but they have become the best of friends and even tell people that they are twins (just 19 months apart!).

Shelby started walking with the help of a walker not too long after her second birthday.  And now, at six, she walks (or runs) so well on her own.  Many people in meeting her for the first time have no idea of her past, she compensates so well.  Shelby is in a regular kindergarten class but is allowed a few modifications, she sits with her left side facing the teacher so that she can see and hear better (she is also deaf on the right side, which was discovered about a year ago).  She’s also allowed to walk with her arms out for balance and is given extra time on some writing as this is still a bit difficult for her (she now writes left handed).

Through everything, our little girl has kept her sweet smile and a great attitude.  She is a wonderful testimony to many other cancer patients that we meet, especially the older ones.  She has no fear of the elderly and seems to have an almost sixth sense about her when meeting other cancer patients.  She will seek out strangers just to touch their hand and it’s only later that we learn they are going through treatment or just got a diagnosis.  

Because of her great attitude, Shelby is going to receive the Young Heroes award on May 12th at Madigan Army Hospital in Tacoma, WA.  The award is given to children facing terminal or life altering illness that have a giving attitude and outlook despite of what they face.  If there was an award tailor-made for our little girl, it’s this one. When life gave her lemons, she made lemon-aide and shared its sweetness with everyone she knew!!

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Truly Inspiring: Peyton’s Story

Peyton was diagnosed on September 15, 2010 with a Diffuse Intrinsic Pontine Glioma.  It started when Peyton’s left eye crossed overnight.  I had noticed a couple of days before that his eyes were crossing periodically.  My thoughts were, “he figured out he can cross his eyes”, and didn’t put much more thought in to it.  But when his left eye stayed crossed, I called the pediatrician and got the last same day appointment for him to be seen. 

I feared that it was a brain tumor because what else would cause his eye to cross overnight.  His pediatrician called and got us in to see an ophthalmologist the next day.  We had to drive 1.5 hours to meet with the ophthalmologist because my husband was stationed in a small town.  We met with him and he thought it could be strabismus.  But he wanted to order a MRI to clear him for anything worse.  I started thinking, how am I going to get a two year old to wear glasses and a patch?  A MRI was ordered for the next day, so we got a hotel room instead of making the drive home and back. 

We got up early that morning and took him to the hospital, not knowing this day was the day that would change our lives forever.  I will never forget these words, “Our worst fears have been confirmed.” It all happened in slow motion as the doctors told us of his brain tumor.  They told us we would have to meet with a neurosurgeon to discuss if the tumor was operable.  As we waited for the neurosurgeon to get out of surgery we paced and cried and held our baby boy.  The neurosurgeon did not have good news for us either. 

We were admitted that night for observation and met with doctors the next morning to discuss treatment options.  We made the decision to be treated in Atlanta so we could have family support. We booked a flight to Atlanta that day and we flew with the clothes on our back.  We were picked up by family and taken straight to Scottish Rite to meet with doctors and start treatment.  Peyton went to radiation five days a week for six weeks and was sedated every day for this.  Next, we started his chemotherapy.  His first MRI showed that the tumor had shrunk significantly and we continued chemotherapy. 

Around Easter 2011 we noticed that Peyton was starting to trip a lot and the Monday after Easter I could tell that he was walking differently.  We called the doctor and they had us go to the emergency room.  A CT scan revealed the tumor had grown, so our oncologist ordered a MRI which re-confirmed the tumor had grown.  We decided to stop treatment at that point.  The tumor had grown and was back with a vengeance. 

The tumor took control of Peyton’s body much faster than the doctors thought it would happen.  We were able to take Peyton to Disney because of Make-A-Wish.  We had to call his oncologist while we were there because his symptoms progressed.  Peyton won his battle June 3, 2011.  Peyton is now alive and healed in Heaven and that tumor is dead.

Our Peyton was a precious boy and he taught us so much in the short time we were blessed to have him.  He taught us about Love, and what is really important in life.  Peyton loved life, he loved hitting the tee ball and playing outside. He loved Buzz Lightyear & the Toy Story gang and Mickey Mouse Clubhouse.  He loved to dance and sing.  He loved showing his “Bay Sis” what life was all about.  He enjoyed the Georgia Aquarium – visiting the sharks, Nemo and Dori, the turtle and petting the stingrays.  He never missed an opportunity to enjoy some vanilla soft serve ice cream. 

We miss him every day and my heart breaks when I think about what damage a brain tumor can do to a child.  I pray daily for a cure and for families who continue to fight this horrible fight.

We love you Peyton “To Infinity and Beyond”!

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Truly Inspiring: Morgan’s Story

Our daughter, Morgan, was born on May 14, 1991.  She was a beautiful baby and the joy of our life.  Around the age of nine months, she began to have these “episodes”.  We couldn’t imagine what was going on.  She would always turn her head to the right, her little right hand clenched, and her face was very pale.  I called the pediatrician several times and spoke to the nurses, who told me maybe she was having a temper tantrum, maybe she was allergic to her formula, or it’s just something babies do.  I just didn’t feel right.  I felt something else must be happening to her.  At her one year check-up, I told the pediatrician again what was going on.  She took me seriously and scheduled an EEG, just to put our minds at rest.

So, on her first birthday, we took our baby for an EEG.  Little did we know, it would be the first of many.  An appointment was made with the neurologist to discuss the results.  During the visit, the doctor asked us what happens when she has the episode.  Morgan was sitting in my lap and at that moment, she had one.  “Oh!” he said, “that’s a complex partial seizure.  I wish I had a camera.”  He continued on, saying that there was an abnormality on the EEG.  They would need to have a CT scan done.  The results of that test showed there was something on her brain.  An MRI needed to be done for more clarity.  I’ll never forget taking her to the MRI.  She had to be sedated, of course, so they gave her a drug that made her fall limp in my arms.  She was like a rag doll.  I had to walk with her to a trailer where the machine was and since there was no room for me, I had to leave her with the technicians.  My husband was at work, so I sat alone, waiting.  My mind did somersaults with what ifs.  It was finally over and I could take her home.  The neurologist told us at the next appointment that there was definitely something going on with her brain.  It could have been a stroke, it could have been some tissue that didn’t develop, or it could be a tumor.  We were devastated.  Did I do something wrong when I was pregnant?  How could this be?  She’s only a baby.  They would need to do surgery to determine what it was. 

June 19, 1992 was the worst day of our life.  We took Morgan to Scottish Rite Children’s Hospital, which is now Children’s Health Care of Atlanta.  We were in the pre-op room and the nurse came to take her to surgery.  I had to let her go and give her to the nurse.  We didn’t know what to expect or what the outcome would be.  We both broke down and the nurses kindly took us to a room where we could be alone.  We sobbed for our daughter.  What was going to happen now?  The surgery took around six hours and during that time, we had a few visitors to keep us from going crazy with worry.  My mother was there and her pastor and a few friends.  The hospital chaplain came to pray with us and he gave us both a rosary ring.  I wasn’t Catholic, but I treasured that touchstone.  It was finally over and the surgeon came to speak with us.  It was a tumor.  He said that it was the size of a golf ball, but it had “fingers” growing out of it.  He got as much of the surrounding tissue that he could without damaging her brain.  What now?  She was taken to recovery and on the way down the hall, they let us see her.  Her little head was bandaged in white gauze and she was so tiny on that gurney.  The nurse accompanying her handed me a plastic bag.  In it was her hair.   They had read my mind!  They knew it would mean so much to me to have that.  It was her first haircut.

She was taken to the ICU and we slept in the waiting room that night with other parents. The next day she was taken to her room.  I remember leaving her room to go to the cafeteria and when I returned she was walking around her crib with the nurses around her.  She was amazing!  I couldn’t believe she was doing so well.  On Monday morning, the surgeons came around and told us we could take her home.  They sent the tissue off to pathology and we would know soon.  She had been in the hospital for 3 days.

We waited for what seemed like forever.  Dr. Hudgins, the surgeon, called and told us that her tumor was consistent with gliomatosis cerebri.  He did not think that it was that, but the pathologist at Duke said it was.  There was nothing they could do.  She was too young for radiation and there was no effective chemotherapy.  “Love her with the time you have with her”, he said.  I didn’t know what to do with myself.  I called my husband at work and told him.  We were overcome.  My mother came over to be with me.  We just looked at her and held her.  Tears were flowing. That was 20 years ago and I remember everything that happened, like it was yesterday.

Morgan was followed up with countless MRIs and lab tests.  No recurrence was ever found and at her 10 year follow up, we were told that she had proved that she did not have gliomatosis cerebri, it was an infiltrating astrocytoma.  She is still on anti-seizure meds and she is followed up by a neurologist every 6 months or so.  She is tumor free.

Thanks be to God!  She has been cured.  She never had any radiation or chemotherapy.  She does have some learning delays which are being addressed at her college.  She is a sophomore studying graphic arts.  Again, she is the joy of our life.

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Truly Inspiring: Mikie’s Story

Michael Lee was born on May 28, 2010. Mikie, as we call him, was a very happy baby and from what we thought was very normal. One evening after coming back home from a family outing, I was holding Mikie, feeding him, and noticed his eyes where jumping. I called his doctor’s office the next morning and told them I need to get him in to be seen. I took him to the doctor and was told there was something wrong, that they wanted him to see an ophthalmologist to see if she could tell me what was going on. We took him to see her one October 13, 2010 and she told us that she could not see in his eyes the way she needed to so she sent us for a MRI on October 15, 2010. That was the day my life stopped turning.

On October 15, 2010 we were told that our son had one large mass in the front of his brain and two golf ball-sized masses in the back of his brain. So his PCP sent us that day to see the neurosurgeon who then sat us down and told us what we were going to do to start Mikie’s fight. On Sunday, October 17, 2010 we were getting ready for church and I had just finished feeding Mikie his morning breakfast. AS soon as I got up to put his bottle in the kitchen, Mikie puked across my living room. This was something I had never seen in my life so we called the doctor; he told us to take him to the nearest ER and tell them what we had found on the MRI and that he needed a CT scan done to make sure he wasn’t building up pressure in his brain. We grabbed our stuff and went on.

On the way to the ER, the doctor called me back and told me to bring him in to Greenville Children’s Hospital and that they would admit him to the hospital. We got to the hospital and they took him straight back and the doctor was standing there waiting on him. He told us that he wanted to see him to make sure he didn’t need to go to the PICU. They determined that he was stable enough to go to the regular PEDS floor, so we got to the floor late afternoon. It was just mommy and Mikie; Daddy had gone back home to get us some cloths.

We got to the floor and the nurses were great with him. They showed us where everything was and they explained everything that they were going to do to him before they even did it…that was great. So they finally got an IV started on him after three pokes and he was settled in his crib when his daddy got back.

On the morning of October 19, 2010, things took a turn for the worse. It was around midnight and I was just getting settled in for the night. I started hearing alarms go off. Not sure what they were, I pushed the button for the nurse to come and I asked her what was going on. She told me that he was desatting and I asked, “What is that? What does that mean?” She told me that when he was sleeping his heart rate and O2 levels were dropping. We watched him for a while and he kept doing it. She called the house doctor and he came and watched him too. He was worried so he sent someone to call Dr. Troupe (neurosurgeon). Within minutes she was back and said Mikie needed an emergency head CT scan and they wanted him to be transferred to the PICU.

In the PICU, the doctor was there waiting on us and they hooked him up to the monitors. He said Mikie’s brain was swelling and they needed to do an emergency operation on him. He was taken in to the OR at 5:30 am on October 19, 2010 and he was in the OR for almost eight hours. Dr. Troupe called me every hour to tell me he was doing well. The last two hours we didn’t hear anything. I got scared. When the doctor finally came out, all he would say is that Mikie was very critical and that we needed to take family only and go to the 4th floor waiting room where he would come talk to us.

On the walk up there my mind was going 50 miles an hour. We got there and he came in and told us that he wanted to talk to me and his daddy by alone. Then I knew something was wrong. He walked us to the PICU and put us in this little room where it was just me and him; one of our friends came back and they let her stay with us while they gave us the news on our 4-month-old baby at the time.

They told us our son was very critical and that they were able to get out the big tumor but they wouldn’t be able to get the two in his back. They went on to tell us that our son’s tumor had its own blood supply and that when they went to cut out the last of the tumor he started to bleed out. The doctor told us that our son had lost 720 mls of blood and that was 95% of his own blood.

He was kept on a ventilator for the next three days. His room was quiet – we had to keep our ringer off on our cell phone and we weren’t allowed to watch TV unless we kept it very low. On day four after his surgery, they were talking about taking him off the ventilator and we would see how he does with it. She turned off the machine and told us he would start waking up and breathing on his own. Within minutes of turning off the machine he started to move his hand and then he tried to reach up and pull the tube out of his mouth so they took it out and he did great.

On November 7, 2010 we finally got pathology back on his tumors and they told us that it was called low grade glioma (a.k.a. astrocytoma) and that they were malignant. He started chemotherapy on November 9, 2010. They told us that he would need to be on chemo for a year.

He is now getting ready to turn two on May 28, 2012. On April 03, 2012 we had our latest MRI and they told us he has a new tumor but we will recheck in in July 2012.

You can follow him on my facebook page @ jessica bloomingdale and he has a facebook page @ praying for baby mikie.

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Truly Inspiring: Iliss’s Story

Iliss Marie Benjamin was a special young lady, excited about graduating from 5th grade and looking forward to going to middle school. Celebrating the end of the school year on a trip to Ruby Falls, Iliss didn’t feel well coming home. She appeared to have a sinus infection and had headaches that followed her course of antibiotics. At the end of May 2009, her family’s suspicions were confirmed; she had a Suprasellar, Nongerminoma Germ Cell brain tumor. The family’s faith in God and the love and support of family and friends created the “angelic care” that Iliss needed to fight the war against her cancer.

Iliss endured six rounds of chemotherapy and 30 days of radiation. She became very popular at Scottish Rite and Piedmont hospitals. Everyone remembers her love for arts and crafts – making cute bracelets, hanging out in “The Zone” and shopping! Iliss loved the colors pink and purple and she loved anything with “bling”. She had every “bling” outfit from Justice or JC Penny and even had “pink bling” D&G eyeglasses. Not to mention the matching handbags and silver glitter boots.

She loved her friends and her church, and was often found reading her bible and praying for the other children in the hospital.  She enjoyed her life in remission with trips to Orlando and Cleveland to visit family.

Iliss was back to her middle school, excelling in her classes and getting involved with activities at school and church. When school was starting the following year, Iliss was cleared to have her port removed. Despite clear scans, Iliss started having leg pain in August of 2010. Unfortunately, the cancer was back and small lesions had spread to her spinal cord and to the back of her brain.  The second battle of chemotherapy was more difficult and the decrease in Iliss’ mobility was challenging. She required a walker and a wheelchair and had a tougher time with eating.  Iliss still pushed and still wanted what she wanted! I guess you can say that she was a little spoiled!

Iliss insisted on making several shopping lists for her Mom and Grandmothers to cater to her needs. She had every snack imaginable in their hospital bag and kitchen pantry.  Because her mother is a RN, she insisted on having hand sanitizer and disinfection wipes in her purse, bedroom and hospital room. She loved to keep the “pink” Airwick air freshener with the nightlight at the hospital too. Even when it got very difficult to eat, the nurses knew Iliss wanted her Sunday Krispy Kreme donut.

It was a beautiful Christmas and Iliss got her way again. The snow that she missed from Ohio definitely came to Atlanta. The games she wanted, she received. The chemotherapy that she didn’t like wasn’t working, and her parents agreed with Iliss to stop treatment in January 2011. 

Iliss had lost all of the steroid weight from the year before and she was back into all of the clothes she loved. Her taste buds were coming back and she nibbled on snacks from the “pantry surplus”. She was able to stay in bed or on the couch and sleep as long as she wanted. She even prayed that she was ready to go to Heaven.

God granted her the ultimate wish, once again, one month before her 13th birthday. On February 23, 2011, Iliss went to play with the angels she often spoke of, in her favorite pink polka dot gown and hot pink nails. She was resting in her room with her Hello Kitty radio playing. Not a week goes by without a testimony from another person who grew stronger and wiser from Iliss’ journey. Her family will continue to share and encourage others to hang in there and trust God. Iliss’ story has inspired her bff’s to volunteer and to give back to other children at the children’s hospital. The Brain Tumor Foundation has provided multiple means of support to the family and even today, there is a bond that will last forever.

So, when you see something pink, glittery or bling, or go shopping at Justice…just know that Iliss Marie may be near.

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Truly Inspiring: Josue’s Story

Hello everyone. My name is Josue Delgado. I am from Sarasota, FL. I have been living here for over 14 years. I moved here from Barroteran, Mexico in 1997 when I was seven years old. And I would like to share my story with you all.

At the age of 14, when I was in the 8th grade, I took an end-of-year field trip with my school to Bush Gardens. When I came back from the trip I started to get these terrible headaches. At first I thought I was going to catch a cold or flu due to going on all the water rides on the park and not drying myself. But several days passed and the headaches didn’t get better which resulted in my having a seizure.

I was taken to Sarasota Memorial Hospital and then transported to All Children’s Hospital in St. Petersburg, FL. There the Doctors there diagnosed me with a brain tumor. I could not believe this was happening. I felt lost; I didn’t know what to do. I had all these emotions come at me all at once. After two months and more than five brain surgeries, I was released from the hospital. The doctors told me that, due to where the tumor was located in my brain, they could only take out 65 percent of it out and I would therefore have to receive radiation therapy to destroy what was left of the tumor.

I had six weeks of radiation treatment done at Bayfront Medical which was located right next to All Children’s Hospital. The treatments worked, but after a year the tumor came back. The news hit me like needles piercing my stomach. The doctor, Dr. Stacey Stapleton, said that she wanted to start me on chemotherapy because radiation therapy was not an option.

Once again I had to go into surgery to have a port placed so I could start the chemo. After going through three different types of chemo, because they didn’t work, Dr. Stapleton had me go through a combination of two different types of chemo at the same time. I prayed to God every day that this chemo would heal me and that it would be my last.

I give thanks to God every day because that was my last chemo and I was cured from this illness. So, after fighting for six years I was cured. Dr. Stapleton ordered for my port to be removed on February 7 2011 – that was one of the happiest moments of my life.

A little bit over a year has passed and I have now graduated from Sarasota High School with honors. I have attended SCTI (Sarasota County Technical Institute) and have obtained an Accounting Operations certificate and Business Supervision Management certificate. I am now 21 years old and hope to continue my studies later on in the future.

I want to first of all give thanks to God for giving me the strength to get through this and also my mom and dad who also were my rock through all of this. I am very thankful for everyone that helped me and my family get through the hard times. Thank you and God Bless!!

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Truly Inspiring: Lucas’s Story

Lucas Antonio was born January 9, 1997. I can still remember the first time I saw him. The little bit of hair he had looked red, I was so scared but so happy. This was the best day of my life…becoming a father. My mom always said I would be a good father one day and the day had come – I didn’t want to disappoint her. 

As Lucas grew, his uncle noticed his left leg was bowed. I didn’t think much about it at first, but his mother and I noticed it affected his running and balance so we went to the doctor. They took xrays  and the doctor said he had a rare bone disease called Focal Fibrocartilaginous Dysplasia. They explained that a place below his knee was cartilage when it should be bone. We weren’t sure who to go to but a friend of the family suggested the Shriners Hospital for Children in Greenville, SC. We lived in a small town and they knew someone who would sponsor us, so we made the trip.

There the doctors explained they had to break his leg and their hope was that the bone would grow back like it should be. Lucas had to wear a double cast on his legs. At three and four years old, he handled it better than I could have. We went back weeks later and the doctors saw no change. We were so disappointed, but after several visits we finally got great news – the surgery was a success and my son was healed.

We went back home and life was great. He could run, jump and skip. God blessed our son as the years went by. He played soccer, T-ball and baseball. We also spent a lot of time fishing (I’m still not sure which was his favorite thing to do). I remember trying to talk him into playing my favorite sport of all…FOOTBALL.

He had no interest at first, but finally, one day I asked saying, “You sure you don’t want to play? You get to hit people.” He smiled and said, “Yea.” I replied, “They get to hit you too.” He looked confused but decided to play and he found his love of football. I loved watching him. He gave 120% the whole game. I was so proud. His first year he wore #52 and they called him little Ray Lewis. And although he didn’t know who Ray was, he sure played like Ray. He played four years of football and absolutely looked forward to football season every year. His last season he went to a new school; they only had nine kids on the team. While you would think they would be whipped by every team they faced, Lucas fought hard.

After that season was over he complained of headaches. They were so severe they made him puke. We  took him to the doctor where they said it was his sinuses and they sent us home with a prescription, explaining we’d have to go to the hospital for tests if it didn’t get better.

His mother and sister had gone away for the weekend but they came back early so we went and took X-rays, but didn’t find anything; they also did blood work CT scans and still nothing. We went home the next day.

He was admitted to the hospital the day his right eye was dropping. They called an eye doctor who ordered an MRI. That evening we got the news – he had a tumor on his brain stem. I was confused and just thought everything was going to be fine. They referred us to the Children’s Hospital in Birmingham, AL where the doctors were blunt. They told us to give Lucas the best Christmas ever, that he had no chance of making it; we would only be prolonging his passing.

I was nervous but still thought, “We’ll get through this. They are wrong.” We met all kinds of doctors and did the paperwork. They scheduled the surgery and we returned home. His mother kept hearing announcements for St Jude on the radio and felt it was a sign telling her we needed to go there. She called, got the information and a day later we were on our way to Memphis. 

We also got the same horrible news we did in Birmingham. I started worrying but still thought, “We’ll be fine.” We spent nearly two months going through radiation and chemo. Lucas held his nose and chased the chemo with chocolate milk. It was hard watching, but my little man was so brave.  

People’s hearts poured out with love, care packages and gifts. It was always nice to see him smile. We went out to eat wherever he wanted and did what he wanted on Christmas Eve and that was great. We watched him play video games, he was so happy with his gifts.

Christmas morning he was hurting.  We went back to the hospital and were there all day. After the weeks of treatment, we made it back home. 

Lucas would get tired easily, but still I had hope. He had to decide what to do and/or where to go on his Make-A-Wish trip. He decided on going to Puerto Rico. We had a lot planned, the resort was beautiful with its built-in water park. Unfortunately, he had trouble standing for long periods of time, and was only able to go fishing and he out-fished me!

When we got home I remember cooking him breakfast and he had trouble holding the fork. I asked if he wanted help and he said, “You’re not going to feed me.”  He fought ‘til we had do everything for him. He never complained. I know he had to be scared, but he wouldn’t show us his fear. His Pastor visited one day and they talked about heaven. He said he wanted to go…but not alone. My boy was transformed from a child to an elder. 

One of the last things I remember him saying was, “I guess you only get one miracle in life.” He was so wise and so unselfish. On June 9, 2008 My Little Angel went home. I think of him often and smile. I thank the LORD for the time he gave us together. I love you Lucas.

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